Hi everyone

Hi Lindielou

I was diagnosed with T2N1M0 HPV16+ tonsil cancer in 2023....Chemoradiotherapy was the treatment given...tonsils were zapped  out of existence with radiotherapy...chemo was used to mop up any residual cancer...

As for surgery I cannot really advise....Radiotherapy seems to be the gold standard....it comes with the possibility of challenging side effects....though some tolerate the treatment better than others....the treatment has around a 90% success rate

Peter

Hi Lindielou lots of us here 

I had cancer of the tonsil on the back of my tongue. 
Sadly a tonsillectomy often doesn’t rid you of all the tissue. 
There is always the possibility of having g radiotherapy ass well as surgery and that will depend on what the surgeon and pathologist find 

I had six weeks of RT, I’m six years clear and living well. 
Stay with us. You’ll have lots of questions and there is always somebody here to talk to. 

Thank you for your reply. They've told me I'll have 6 weeks radiotherapy  5 days a week. But they found a swollen lymoh node on the otherside that now needs pet scan to investigate, so another 2 week wait. if thats dodgy then chemo too. its so hard making the decision.

hi thanks for replying. Did you get many side affects from the radiotherapy?  Not really wanting to go through surgery.

Yes, I also had a swollen lymph node...the treatment is challenging no other way of dressing it up....but the alternative to not having it was unthinkable...68 years of age when I was diagnosed...it is very doable.

Is your cancer HPV16 plus?....have you been offered a feeding tube?

Hi again my tumour was inoperable so RT was my only option 

Acute side effects are pretty standard but we all react differently. 
RT causes a lot of inflammation and ulceration in the mouth and throat but good analgesia mitigates the pain. 
If you are offered a PEG ( feeding tube) take it up. Most of us can’t swallow for a good few weeks. 
It all sounds awful and it is a challenge but it lasts only a few weeks, recovery a good deal longer. 

Most oropharyngeal cancer is caused by HPV and has a high cure rate of over 90%
Have a look at my blog linked at the bottom of my post for a little more info 

1. Yes its hpv positive thats all ive been told so far, guess I'll find out more at next appt. they did mention feeding tubes if needed. It's all so scary only 57 and only saw a doc on 3rd jan, diagnosed really quickly.

Hi

i had mine removed when I was .5

my ent surgeon told me some does get left

i wasn’t offered surgery 

I am due to start radiotherapy 6th March with curative intent

Hi I’m 7 years post radiotherapy for tonsil cancer with lymph node involvement. I had chemo radiotherapy which tends to be the gold standard procedure. Radiotherapy isn’t a walk I. The park I was 61 and I did it band have been living a great life since.
 Do you know your staging ? and are you hpv positive that’s the most common cause for our type of cancers. 
di you have a cancer nurse sssigned might be good to speak with them. 
best wishes 

Hazel 

The initial reaction is to be very scared....we've all been there...try to stay away from Dr Google...a lot of outdated info there....the posters on here are much more helpful and will support you 24/7